Botox, Tenotomy and Tympanic Neurectomy for Noxacusis

If Botox doesn't help, you could maybe try intratympanic Lidocaine + Dexamethasone.

A few years ago, I also thought it was a muscle problem; however, Dr. Boedts confirmed that my stapedius reflex was fine.

→ Evaluating the Effects of Intratympanic Dexamethasone and Lidocaine in Refaractory Tinnitus

Do you experience pain when you sneeze?

 

So Dr. Boedts hasn't been able to help you?

 

Predominantly delayed burning/searing open wound like pain.

Well, this is unknown territory. Firstly, we don't know if Botox will work at all. Secondly, I would think it is likely that a repeat injection may be required after a few months. My hope would be long-term I would need the injection less frequently.

The consultant doing the procedure is carrying out Botox procedures for various ENT issues and she said most of her patients are regulars who get it done every 3 to 4 months.

I think intratympanic Lidocaine would be a very bad idea as it's toxic and would probably do more damage than good. I can't read the full text of the link you have posted, but there is a very limited number of things you can put in the middle ear safely. I would surely be much better off repeatedly doing that into the Tensor veli palatini.

I don't think the stapedius has much to do with it, because that wouldn't explain the referred trigeminal pain, and again why did Lidocaine into the Tensor veli palatini cure me. It may be worth it having another chat with Dr. Boedts now as research has developed a little bit more since a few years ago. As someone stated further up this thread, he thinks in the next 2-3 months he will have an even greater understanding.

Sneezing doesn't give me any particular extra pain.

 

No. But back then, he only tried patching the eardrum two times.

 

@Olly132, did you have the Botox yet?

 

Okay, so to update you, I had my Botox injection on 17 April. I also had 50 units of Dysport injected into my right tensor veli palatini using an EMG-guided needle. It's now been 12 days since the injection, so that should be enough time to reach peak effects.

By the 3rd day, I noticed a significant drop in tinnitus, which was a nice little surprise bonus. That drop in tinnitus has continued. My tinnitus fluctuates a lot in volume anyway, so it is difficult to say precisely how much by, but it has also become softer and so far more tolerable.

On the 4th day, my baseline pain was eliminated. I always have at least some pain or discomfort, even if it's very slight, but this has disappeared. My tolerance also increased a little—not loads, but noticeable.

I had three days like this, and my ear began to get more fatigued over these days, but it was still not painful. Anyway, eventually, this led to a setback, which I must admit is a bit of a nasty one. So, in hindsight, perhaps we should wait the full two weeks after Botox before even trying to increase sound exposure.

I have had no side effects, adverse reactions, or issues swallowing, which suggests I would be able to tolerate a higher dose.

However, even in those days when I was feeling better, I could still feel a muscle spasm sensation in the ear/Eustachian tube. So my feelings are that targeting the Botox through the soft palate is probably not going to be effective enough to provide sufficient relief. It's not my palate that feels tight; it's more about the area around the Eustachian tube. Botox doesn't really spread that far.

I had my follow-up appointment with the ENT today, and she seemed really happy with the results. Particularly, the drop in tinnitus seems to indicate there probably is an issue with this muscle. Therefore, she would like to get me back as soon as possible for more Botox, except this time to try injecting it trans nasally and hopefully at a higher dose.

I'm not quite there yet, but maybe I'm onto something.

 

What part of the UK are you from? Where are you receiving the treatment?

 

@Olly132, do you have any updates? I'm curious to see how the trans nasal Botox went if you've had it done yet. I hope things have improved for you.

 

I recently had the trans nasal Botox procedure for pain hyperacusis. 10 mg of Botox on each side of the TVP. It didn't really do much, I'm afraid.

 

I'm sorry to hear that. Thanks for sharing your results.